Thursday, January 1, 2009

An interesting Blog Post

Works for both Cushing's and various cancers.  The original post is here:

Part of it reads

The role of patients with chronic diseases and their physicians must be clear to both patients and physicians. Physicians are coaches. Patients are players. They live with their disease 24 hours a day. Day to day fluctuations occur in the management of chronic disease. An excellent example is patients with hypertension. Blood pressure fluctuates all day long. A single blood pressure measurement during a visit to a physician once every six month is meaningless. Patients must continually monitor their blood pressure to evaluate the effect of their medication. Physicians have to help patients evaluate these data points to make logical medication adjustments.

Patients must to be inspired to manage their chronic disease. This requires patients having confidence in their coaches. It is hard work for patients to monitor their blood pressure daily and learn the meaning of the fluctuations in their blood pressure.

How many of us truly have confidence in their doctors?  My kidney cancer doctor I trust to a degree but I realize that he told me some things to make me feel better about my cancer and recovery.

My Cushing's doctors?  The first one I had no confidence in at all.  He did do the right testing, got me into NIH.  All that was good but I wouldn't trust him to manage the after effects of my surgery.

The doctor I have now I would trust with managing my disease but I know his hands are kind of tied, at least as far as GH is concerned, because of the kidney cancer.

It would be nice if we could have more personal physician/coaches.  Ones who truly knew what we were going through and how to help with day-to-day life.

Yesterday's post about a doctor who had steroid-induced Cushing's would talked about a potentially good coach but s/he is feeling too ill him/herself to coach anyone else.

As usual, I don't know the answer but I'd like to find someone who understood my diseases and knew what it was like to deal  on a day to day basis and have some good answers.

Maybe I'll find that person in 2009...

Happy New Year again!